Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Mar 2, 2022
Date Accepted: Apr 20, 2022
Date Submitted to PubMed: Apr 25, 2022
Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study
ABSTRACT
Background:
Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact long COVID patients and their lived experiences of the condition.
Objective:
The aim of this study is to explore the roles that online peer support groups take on, and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures.
Methods:
I conducted 11 semi-structured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results through manually conducting thematic analysis.
Results:
Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 7 themes and 19 subthemes through thematic analysis. The identified themes were: (1) professional support, (2) societal awareness, (3) diversity of groups, (4) group format, (5) social connections, (6) engagement behavior, and (7) desired changes. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements.
Conclusions:
If employed appropriately, online peer support groups could be immensely beneficial for patient wellbeing, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support’s benefits within broader care structures.
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Copyright
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